A Public Benefit, Non-Profit Organization

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"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease

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The KDA Story

The concept for the Kennedy's Disease Association began in 1999 after Susanne and Terry Waite and Patrick Griffin attended the Families of Spinal Muscular Atrophy (FSMA) Conference. The conference had about 3,000 people attending including six who were living with Kennedy's Disease (KD). The six were invited to attend a special breakout session focused on Kennedy's Disease. KD is not a disease that the FSMA normally focused on, but they did put a breakout together for those living with KD. At the time, there was no organization supporting Kennedy's Disease.

Before the conference, the Waites and Patrick Griffin both had developed their own web sites and were trying to get the word out about Kennedy's Disease. Both also had designs to start a non-profit organization focused on KD.

At the end of the Families of SMA conference, the six living with KD were able to spend some time with twenty-two doctors and researchers from all over the world including Dr. La Spada and Dr. Merry. The six were so excited because they were able to meet the people who were working to find a treatment and cure for KD. During the meeting, Susanne asked Dr. La Spada if they had more money, could their research move along any faster. He said "yes." Susanne then asked if a non-profit organization was formed for Kennedy's Disease, would they support it. Again, the answer was "yes."

When the Waites returned home, they collected all the email addresses in their web site's guest book. There were over 100 names of those with KD or their family members. The Waites talked with Patrick Griffin and they agreed to join forces. Patrick sent all of his contacts and the Waites combined the two into one mailing list. The Waites emailed everyone on the combined list telling them what they were trying to do and asking for their support. They also asked if anyone knew an attorney who would volunteer to help them incorporate and apply for their non-profit 501(c)3 certification. Paul Liu provided a name of a very large and internationally respected law firm. The firm agreed to help pro-bono. The Waites did have to come up with $700.00 to pay for the processing fees and other costs associated with the incorporation.

Audrey Lewis, one of the founders of FSMA, once again supported the start-up of the KDA. She helped mentor the Waites through the beginning stages of the association. The KDA was incorporated in August 2000 and received their 501(c)3 status in November of that year.

Today, the KDA has grown to over 1,300 associates from 50 countries. We also have 99 doctors and researchers who are registered. Through November of 2018, the KDA has awarded $1,233,214 in research grants through the generous donations and support of their associates.